My Sister's Keeper
In her haunting book The Perfect Other: A Memoir of My Sister, Kyleigh Leddy ’19 recounts the fear, anguish, and heartbreak of losing a sister to mental illness.
Gunnar Esiason's odyssey through cystic fibrosis and the American health care system.
It was late afternoon on a Wednesday in May when the crowd started gathering in a basement-level conference room of the Capitol Building. Most of Washington, D.C.’s powerbrokers were focused on the results of the previous day’s smattering of primaries, and the gun-control debate following the recent mass shooting in Buffalo. The conference room, however, was a partisan-free zone, something of a rarity in D.C. these days. Patients, doctors, scientists, and health policy wonks had gathered to watch a preview of the documentary Salt in My Soul, which tells the wrenching story of Mallory Smith, who spent her life fighting cystic fibrosis, the rare, often fatal disease that causes individuals to produce copious amounts of mucus that’s as sticky as rubber cement and that clogs up their airways and organs. Smith, an author who fastidiously documented her life with the disease, managed to receive a potentially life-changing lung transplant in 2017, only to die weeks later at age twenty-five of a bacterial infection that was resistant to treatment with antibiotics, a common fate among cystic fibrosis patients.
Among those milling about ahead of the screening was Gunnar Esiason ’13, who sported a light gray suit and crisp white dress shirt with the top buttons undone. At six-foot-two and 165 pounds, even slim-fit shirts tend to hang off Esiason’s lanky frame. Esiason, the thirty-one-year-old son of the star former NFL quarterback Boomer Esiason, is witty, fit, and a new father himself. The fact that he is alive at all is sort of a miracle. Esiason was born with CF, as cystic fibrosis is colloquially known, and has spent his life in and out of hospitals and specialists’ offices. But thanks to some recent scientific breakthroughs and the wonders of modern pharmaceuticals, you’d barely know it. “The fortunate story for me, and why I’m still here,” he told the crowd in the conference room when the event got underway, “is that I got into a clinical trial for a drug that ended up altering the course of cystic fibrosis.”
Not long ago, CF was a virtual death sentence. But over the past decade, the drug company Vertex Pharmaceuticals has brought a handful of medications to market that have turned the disease into a manageable ailment for many—but not all—CF patients. Having slogged through the labyrinthine trenches of American health care, Esiason has emerged as a prominent advocate who wants to change the way companies, health systems, and legislators engage with patients. He’s pushing to make clinical trials more accessible, and for policies that could improve access to lifesaving drugs. His appearance tonight, in fact, was to lend support to a bipartisan bill, known as the PASTEUR Act, that would allow the federal government to provide financial incentives to companies that successfully develop new antibiotics.
It’s a piece of legislation that Esiason’s life—and those of tens of thousands of other patients across the country—may depend on. Esiason has largely gained control of his CF thanks to currently available drugs. But people with CF are exceptionally prone to bacterial infections, which require antibiotic treatments. Antibiotics are imperfect medicines, however, and each round of them can leave behind some bacteria that evolve ways to evade future courses of that particular treatment. These antibiotic-resistant bacteria are often called “superbugs,” and they are a medical nightmare.
Esiason knows this as well as anyone. When he was a young kid, a bacterium named Pseudomonas aeruginosa burrowed into his lungs and has never really gone away. He has suffered through dozens of flare-ups, and consumed dozens of rounds of antibiotics to tamp them down. The result of this biological game of whack-a-mole is that Esiason is nearly out of antibiotics that will work for him. It’s been nearly forty years since scientists have developed a new class of antibiotics, and many pharmaceutical companies have pulled out of the field because the drugs, which are typically only administered for a week or two, aren’t very profitable.
“The greatest curse of CF is that you know what’s coming,” Esiason told the room. “There comes a time when, ultimately, the antibiotics we take for years dwindle.”
Patients haven’t always had their voices heard, especially in the top-down medical power structure that emerged in the late nineteenth century, Richard Sharp, a bioethicist at the Mayo Clinic, told me. This structure, he said, created the doctor-knows-best dynamic that left many patients feeling disempowered and alienated from the institutions that were caring for them. It wasn’t until the 1980s, during the early days of the HIV/AIDS epidemic, that a new patient advocacy movement emerged. Groups like ACT UP took to the streets, protesting at pharmaceutical companies and government agencies, and they paid close attention to the science in hopes of influencing drug development.
“That really transformed the landscape because it showed that patients can mobilize resources and control the research agenda,” Sharp said. “They realized early on that unless they spoke up, unless they proactively sought to shape the priorities of medicine and science, they were going to continue to be treated as subjects and not partners.”
Esiason belongs to the first generation of patient advocates to have come of age in the era of social media. His campaign to raise awareness of CF has earned him more than thirty thousand followers across Twitter and Facebook, and a guest list of senators, governors, and best-selling authors for the podcast he hosts. “What I love about Gunnar is that he’s not just a patient—he is someone who has deeply studied the issues,” said the Boston University law Professor Kevin Outterson, who joined Esiason on the panel in D.C. and who leads a nonprofit called CARB-X that supports antibacterial research.
Having slogged through the labyrinthine trenches of American health care, Esiason wants to change the way companies, health systems, and legislators engage with patients.
Sitting in the conference room, I was struck by Esiason’s ability to speak candidly, and often humorously, about everything from health care policy to his own mortality. (I work for a firm that invests in small biotechnology companies trying to develop new antibiotics—and, full disclosure, I agree that new policies are needed to address antibiotic resistance, which now kills more people globally than HIV/AIDS or malaria.) If there is a policy that has the potential to impact people with CF, or any rare disease, chances are that Esiason has a sharply informed opinion about it. When the former New York Governor Andrew Cuomo, at the height of the COVID-19 pandemic, gutted a longstanding program that provided financial assistance to CF patients, Esiason wrote a blistering New York Daily News op-ed, calling the decision “health-care rationing at its cruelest.” (The program was later reinstated.) In USA Today, Esiason and Emily Kramer-Golinkoff, a bioethicist who has cystic fibrosis, decried the fact that many states were failing to prioritize access to COVID vaccines for people with the preexisting condition of CF, while smokers were being sent to the front of the line. More recently, he torched the financial services firm Morningstar, arguing that its method of rating drug companies disincentivizes them from investing in rare-disease research.
In the conference room, legislative leaders stepped up to the lectern to express their support. Sen. Michael Bennett, a Democrat from Colorado who co-sponsored the PASTEUR Act, said “the market is broken for antibiotics” and warned that antibiotic resistance “could become the leading killer in the world.” House Minority Leader Kevin McCarthy and the Arizona Republican Congressman David Schweikert shared concerns over drug-resistant fungal infections, another minefield for CF patients. Attention then shifted back to the panel and Esiason’s urgent desire for new antibiotics. “I want something new on the [pharmacy] shelf that my provider can use at a moment’s notice when they need to,” Esiason said. “I want to go back to the feeling of reassurance that I had when I was twelve, thirteen, fourteen years old.”
A few days after the event, I spoke with Esiason over Zoom and asked him about building bipartisan consensus at a time when there is such a pronounced political divide in the country. “I don’t see myself as being in politics,” he said. “I don’t care if my ally is a Republican or a Democrat. I don’t care about party lines in that sense. It’s really just a matter of who is willing to help us at that moment.” There is a sense of urgency to everything Esiason does. After all, he knows that if there’s one thing people with a rare disease don’t have, it’s time to waste.
Esiason, who was diagnosed with cystic fibrosis at age two, learned early on that sick people can wield enormous power. He had woken up early one morning in the first grade to go with his mom and dad to Cincinnati’s Children’s Hospital. He’d long since grown accustomed to making frequent trips to see the hospital’s specialists. But he sensed something was different on this morning. His parents seemed tense and muted. Then, on the drive to the city, his dad turned around and blurted out “this isn’t gonna hurt.” Alarm bells went off in Esiason’s head and he, too, grew tense.
It was the mid-nineties, a time when the big question for many CF patients was whether they would die in their twenties or in their thirties. Parents and partners were trained to pound on the bodies of loved ones suffering from the disease to help loosen the mucus slathered in their airways. (This crude but effective approach is still common practice today.) There were medications to help manage the symptoms, but no real treatment existed.
Inside the hospital, Esiason and his family were led to the interventional radiology department, where the seven-year-old learned that he was going to receive a peripherally inserted central catheter. Doing so required the medical team to snake a tube through one of his deep veins so it could be used as a long-term IV to deliver antibiotics when needed. Knowing that the young boy was nervous, the staff asked him to drink a small splash of anti-anxiety medicine. “There was no way in hell anyone was going to get me to drink that medication,” Esiason recalled.
Doctors, nurses, and his parents all tried coaxing him, but Esiason wouldn’t budge. Eventually an anesthesiologist who was short on bedside manner entered the room and bluntly said that if the boy wasn’t going to take the medicine, they would have to put him under because the procedure was “really going to hurt.” With those words, Esiason looked straight at his dad, yelled “you lied to me,” and sprinted out of the room and down the hallway. A moment later, the six-foot-five-inch Boomer Esiason, who had been the Bengals quarterback for the past decade and was arguably the most famous person in Cincinnati at the time, bolted upright and took off in a mad dash to catch his son.
Boomer finally corralled him at the end of a hall. “But there was a handicap railing on the wall,” he recalled, “and Gunnar had the Vulcan death grip on that thing.” Unable to pry him loose and desperate to quell an awkward scene, Boomer turned to the time-tested parenting technique of bribery and promised his son whatever he wanted if they could just get the procedure over with. It was the first time Esiason’s disease had given him the upper hand at the bargaining table, and he knew exactly what he wanted: a Nintendo 64.
In the years that followed, Boomer and the whole Esiason family became prominent CF activists. They launched the Boomer Esiason Foundation, which has raised more than $160 million to help fund medical research, build support systems, and provide scholarships for those navigating the disease. Being an NFL quarterback opened a lot of doors for Boomer, but there was nothing easy in those early days about explaining to the world that his son had a little-known disease that was likely to be fatal. “There were a lot of challenges. We had to be open, we had to be public,” Boomer said. “Gunnar had to be able to go on TV and talk about it at a very young age.”
Esiason fared relatively well through his teen years. His family had established a treatment routine from which they rarely deviated, and they could afford the best care. There were bouts of illness, but he was able to beat them back. He pushed himself physically, often against doctors’ advice, so that he could play football and hockey, and he was strong enough academically to earn his way into Boston College. His acceptance letter was a milestone that both overjoyed and terrified the family.
Most parents who send children off to college fret about things like dirty laundry and raucous parties. Parents of children with cystic fibrosis have to worry about all that, plus much more pressing issues, like what happens if a round of treatment is missed, and where the nearest pharmacies and CF specialists are located.
“College is a transformational moment for people with CF,” Esiason explained. “It’s also historically been a place where we hit the health wall. You’re entering your twenties, which is a time when most people with CF start to struggle with progression issues.” His first few weeks in Chestnut Hill went swimmingly. Rather than hide his illness, Esiason was as transparent as could be. On one of his first nights in Gonzaga Hall, he found himself in a room full of guys cracking jokes and getting to know one another. Esiason figured it was the perfect time to put on the high-powered vibrating vest that many CF patients wear to help break up their mucus, and to use his nebulizer to inhale his nightly treatment. Some of the guys raised their eyebrows. Others joked about what exactly Esiason was huffing and whether he was going to pass it around. It was an unusual icebreaker, but it set the tone in the way that Esiason had hoped, and several of the guys in that room would become lifelong friends.
There is a sense of urgency to everything Esiason does. After all, he knows that if there’s one thing people with a rare disease don’t have, it’s time to waste.
At the start of Esiason’s second semester, things took a sharp turn for the worst. He experienced his first pulmonary exacerbation, a type of severe lung infection that usually requires hospitalization and prolonged rest. “I was nineteen and trying to figure out whether to take medical leave or a medical withdrawal,” he recalled, “or if I should just go home for a few weeks and try to make up the coursework.” The options were limited and Esiason was frustrated. His goal had always been to graduate in four years. After some tough talks with administration and professors, Esiason found an advocate in the dean’s office who mapped out a plan that would reduce his course load during the spring and fall semesters while allowing him to take summer classes so he could stay on his timeline.
The plan came together over the next three years just as he’d hoped in terms of his college experience. In terms of his health, things were more or less a train wreck. A virus during his sophomore year put him in the hospital and badly diminished his lung function. He developed pancreatitis. He dropped to 130 pounds and had to have a permanent feeding tube stitched into his abdomen. From hospital beds and living room couches, Esiason kept on top of his studies, but the hits kept coming. “My senior year basically was illness after illness,” he said. Graduation went from being a motivational goal to a finish line he was desperate to reach. I gotta get out of here, he’d tell himself. I have to get my health under control.
Esiason crossed the finish line in spring of 2013. But while his buddies were accepting their first jobs or opening acceptance letters to graduate programs, he was trying to figure out how to stay alive.
Spend a life living with a disease and it affects more than just your health—it can consume your identity. Patient advocates, especially in the digital era, face a “new domain of dilemmas for personal identity,” explained Aaron Panofsky, associate professor at UCLA’s Institute for Society and Genetics, Public Policy, and Sociology. “Advocacy has opened up a new tension in individuals’ lives,” Panofsky said.
For instance, some people who beat breast cancer will paint their cars pink and put an I Survived Breast Cancer bumper sticker on the car. Others will gravitate toward the mindset of my cancer doesn’t define me.
The decisions most of us make in the years following college shape our personal and professional identities—we find our partners and chart the course for our careers. Esiason’s health was rocky during this period, but he was sharpening his voice as an advocate while networking with like-minded CF patients. They’d swap stories, share life hacks, and bemoan the logistical hurdles of participating in clinical trials. In his spare time, he’d read books on the origins of biotech or the economics of drug development.
“When I was super sick, CF was my identity,” Esiason said. He’d stay up in bed late at night responding in detail to the dozens of emails and social media messages he received from young patients and their parents looking for advice on things like how to manage CF while pursuing school. Responding to those queries and sharing lessons he learned at BC was an “extremely fulfilling” process in an otherwise bleak time, he said. “At that point in my life, when I was twenty-three, twenty-four, twenty-five and very sick, graduating college was my biggest accomplishment, and it felt like it was going to be my only accomplishment.”
Esiason finally caught a break on the morning of April 9, 2018, when he took an experimental medicine to kick off the first day of a Phase III clinical trial of a new drug. As part of the trial, he didn’t know whether he was being given a placebo or the actual drug. But within twelve hours, it was clear that whatever he was given was having an effect. “It was the most remarkable thing I could ever experience,” he recalled. The mucus that had gunked up his airways became thin and watery and poured out. The oxygen levels in his blood climbed to 99 percent, the first time they’d been that high in years. He coughed for three days. Afterward, it felt like someone had flipped a switch and turned off his CF. A few weeks into the study, he played in a recreational hockey game. Before enrolling in the trial, he could skate up and down the ice once before breaking into a coughing fit. Now he felt like Wayne Gretzky. “I think that’s when it hit my dad that the drug we had been waiting for had finally come through,” Esiason said.
To celebrate this abrupt turn, Esiason and his girlfriend Darcy, who is now his wife, took a road trip. On the way home, they found themselves sitting in traffic on the New Jersey Turnpike. Darcy turned and asked, “well, what do you want to do with the rest of your life?” The question blew his mind. For the first time, Esiason realized that he had the luxury to think long term about the career he wanted, the family he wanted, the identity he wanted. He had a life to build, not merely to survive.
Soon after, he enrolled in a joint MBA-master of public health program at Dartmouth University. Having recently graduated, he’s turned his attention to exploring how and when health care companies engage with patients. He believes that patients have a rare understanding of operational inefficiencies in health care and can provide invaluable insights to companies as they develop products or design clinical trials. “I believe firmly, and I will die on this hill, that if you can involve the right patients with the right qualifications at the earliest stage of company creation, you can create a culture inside that new company that will actually be patient-first,” he said.
Now Esiason has a chance to prove his theory: In September, he accepted a job leading patient-facing strategy at Florence Healthcare, a health-tech company that’s working to streamline clinical trials and expand patient access to them. Not long after taking the job, Esiason appeared as a guest speaker at a virtual breakfast hosted by NewYorkBIO, a trade group representing biotech companies, research institutions, and universities. After touting the work of his new employer, he discussed the work of the Boomer Esiason Foundation and launched into his pitch for the PASTEUR Act. “I desperately need new antibiotics,” he said.
The comment was a stark reminder of how vulnerable Esiason remains despite everything he has already accomplished. It made me think of something he’d told the crowd in that D.C. conference room. A few years ago, right around Thanksgiving, he’d said, a good friend and fellow CF patient was admitted to the hospital because of an infection. “She had a last-resort antibiotic that she had leaned on for about two years, and it just suddenly stopped working and she was gone within a matter of days,” he said. “I can’t impress upon everyone enough the fear that you hold when you’re on your last antibiotic.”